Alzheimer's blog

Alzheimer's makes caregivers masters of change

"Alzheimer's disease is the defining challenge of our era. Anyone who is not concerned about Alzheimer's disease is in denial." Those were words spoken by Maria Shriver on the Larry King Special that aired this past Sunday night titled: "Unthinkable: The Alzheimer's Epidemic."

Dr. Jeffrey Cummings from Cleveland Clinic's Lou Ruvo Center for Brain Health, and Dr. Ronald Petersen, M.D., Ph.D., director of the Mayo Alzheimer's Disease Research Center from Mayo Clinic spoke about the Alzheimer's epidemic, the looming economic impact, as well as Alzheimer's treatment, prevention and the critical need to accelerate research.

Leeza Gibbons recalled the time that her mother, diagnosed with Alzheimer's, looked at her and said, "You're such a nice lady — What's your name?"

"It stabs your heart," said Leeza.

According to the special, 15 million unpaid caregivers give up their lives to care for another, and caregivers often become sicker than the person they're caring for — "they are under assault."

On a link from the CNN website, Leeza Gibbons offers advice to Alzheimer's caregivers that I believe may be helpful to many of you. Here is an excerpt:

"Basically, it's (life) all about change. It's inevitable. Change either breaks into your life, or you open the door and invite it to sit down and have a cup of tea. It's coming. You can either react or respond. Your ability to manage change is what will make a difference. In a game of sameness versus change, change always wins. It cancels out the stagnant, the static and the complacent.

"When you are a family caregiver, it's time to become a master of change ... I found my transformation into the world of caregiving was made easier when I remembered to breathe, believe and receive.

"Breathe: Start by taking 10 purposeful breaths; breathing in sheer certainty that you are doing your best. Breathe out all the negativity that weighs heavy in your head and on your heart. This can change your physical and emotional state, slowing down your heart rate, aiding your digestion and reducing your stress so you can cope with the very challenging journey you are walking.

" ... I think there is a way of looking at things that makes a difference. Your frame, the lens through which you create your world, affects everything. No matter where you go, there you are: You, with your approach, your temperament, your expectation. This is where those glass-half-full kinds of people have the advantage.

"Believe: Now is the time to be an optimist. Optimists really do fare better in warding off everything from the common cold to gastrointestinal problems and sleeplessness. Know that you can do it — and that your efforts will be enough. Believe that you can get empowered by others who have achieved this before you. Get strength from them, and know that what you learn on your journey will also lift those who come next.

"Receive: Everyone has limits, and there will be days when you feel that you just can't do it anymore. That's why it is so important to be surrounded by an encouraging community and explore the resources around you. Sometimes, you need to stop achieving and start receiving. Know that real strength comes from knowing your limits and asking for help ... "

"Caregivers — make sure you don't do this alone."
- Laura Bush

To see video from the special and the full article from Leeza Gibbons go to: www.cnn.com/SPECIALS/2011/larryking/

30 Comments Posted

A family member has developed a form of Dementia, and has acted out violently towards his wife. Is that something anyone has dealt with? He is not being given any slack by the legal system. He was very highly educated, and I think that may have interfered with the timing of his diagnosis. He was seen as just mean and curmugeony (spelling?) Things have gone horribly wrong, and I cannot give details for fear of exposing his identity. Any experience with legal defenses (first offenses at that) while suffering from AD which hasn't been fully diagnosed? He is almost 90.

AnneV

June 10, 2011 8:41 p.m.

I was particularly touched by a comment from Charlene. She spoke of caring for her husband for 16 years, along with her son, who selflessly worked at an Adult Day Care Center, and subsequently a Hospice to care for his father. I am awed by your perserverance and your son's complete dedication to his father! You are role models for us all! I cared for my father who ultimately died a gruesome death from metastatic prostate cancer in 1992, and his last words to me were, &quot; Nancy, something terrible is wrong with your mom! Please take care of her!&quot; I did over the protests of my sisters and their grown children, and with the help, of my husband, and my very small children. They came to learn that Grandma was prone to making a fast getaway when you least expected it, and that she had a rather unusual but &quot;funny&quot; outlook on life. She lost so much, but we gained so much information about what she used to be like before she got older and, I hate to say, &quot;cranky.&quot; The disease peeled layers of her personality away, and she became this lovely, untroubled, calm version of herself, who knew that she could rely on me to do what was best for her, and in her darkest hour, said, very bluntly, &quot;now I know why God gave you to me.&quot; We both needed that closure. I was her youngest, born when she was 39, and that was not so common in 1955. It is hard to mourn the death of a loved one who has suffered with AD, but the loss of the vital relationship i

Nancy

May 21, 2011 4:05 p.m.

I have posted some FREE tools and techniques to reduce stress fast on Facebook.
Become calm and peaceful in less than 4 min.
- You won't believe until you try
Go to:
http://tinyurl.com/3cfep6r
Enjoy

Solidfoundation

May 13, 2011 8:12 a.m.

Mary thanks for your kind words.
My wife has entered a new phase of not taking her meds., she will put the pills in her mouth, then goes to the sink to spit them out. She also has glaucoma and its a real struggle to get her to do the required eye drops. What is difficult for me is my left arm is 50% paralyzed and my right is 25% paralyzed from previous strokes. My mobility is ok with the use of a cane, but I manage. My wife is ok most of the day, but early morning and late at night are stressful. I manage to get through the day like I have gotten through my illnesses, one step at a time. Everyone says give your problems to God, well I don't think God interfers in these matters. I see people suffering as much or more than we are, thats life. I wish those folks that are religious or think they are, would step back. Its easy to preach about something, when you haven't experienced it. Alzheimer's doesn't fit a mold and all the advice, religious or otherwise, really is insulting. If family and friends want to help, don't talk, listen and quit giving advice. We who are on the frontline in this fight need real help, not your self egrandizing patronization. For those of you that are suffering, I feel and share your pain, God will help your spirit, he may even help you and your loved ones physically. Don't give up hope, think of Job and his uninvited travelles. Keep your faith.

Frank

May 10, 2011 7:55 p.m.

Frank, I know what you mean about not telling family. Stick to your guns. You are there, they are not, and your agenda is not theirs. I think no two paths are the same. I supervised my mother's care in assisted living for years. but I always knew I wanted her at home rather than in a nursing home. She has been with us for a year and a half now, and won't be here much longer -- her life is winding down. I wasn't sure we could do it but we have, and I am so much richer for it. And the family naysayaers never stopped giving their unwanted and ultimately irrelevant advice. I have learned to keep my mouth shut and be grateful that I have had this amazing journey with my mother -- not all of it wonderful, of course -- and live and let live as far as the distant family members are concerned.

Mary

May 9, 2011 4:36 p.m.

Joan, there is a saying in my support group that goes, &quot;If you know one person with Alzheimer's, then you know one person with Alzheimer's.&quot; NOT every person with AD will rage and need to go on serious psych meds. NOT every person with AD will fall a lot around the house. NOT every person with AD will wander. And the list goes on and on. Whereas ALL people with AD share MANY common symptoms in early and moderate stages, NOT ALL people with AD have identical symptoms. My advice is that you definitely need to get yourself into a good support group, hopefully one that meets weekly and is just for spouses. Same with websites. This website is great but many who read and post here are dealing with parents, grandparents, and people other than their spouse. You should be in touch with others also dealing only with their spouse. You should also check out sites that are designed solely for spouses of people with AD,sites like www.thealzheimerspouse.com where you will be able to engage in online discussions and read lots of informative material posted solely by those who have a spouse with AD.

Allan

May 8, 2011 6:46 a.m.

This is for Mark and others with someone who is still driving with AD.I have a husband who is dealing with the same situation. Not wanting to give up his last form of independence. I printed out the article:&quot;Alzheimer's When to Stop Driving&quot; &amp; went over it with him. He agreed to be my navagator now. But I have also been assured by his dr. that he would also be instrumental in having his license revoked if it was necessary. Also, tranquilizers will aliviate agressiveness. Just get a good dr who understands dementia.

Virginia

May 7, 2011 12:27 p.m.

The more posts I read the more I want to help each one of you and your unique situation. I have tons of experience and lots of patience. I think I am going to start a site or chat room where I can try and help. I worked two jobs and still took care of my grandparents before they passed. I know what it is like and take care of questions answers and residents in an assited living everyday. I am off today and have a memorial I am going to. This is the start of a new found thing I think I will help with for you guys! I have access to a RN also for any questions I don't know myself. I will see you all soon!

~stacy

May 7, 2011 12:19 p.m.

~Joan: Your husband wanders here is a tip if you would like it. Take every door and window in the house and put a wireless alarm on them. Set up your house as if you had a toddler who gets into everything. It will make your bathroom breaks a ton easier. Its for safety for you and for him. It has nothing to do with being adults and he is not a child but it has everything to do with safety and making sure he is safe. You dont want to one day see him on the news as a missing person because he wandered. It will be hard at first to get use to it.. but in time you will feel a sense of relief knowing you can get up and make something to eat without freaking out when hes not in his chair or not in the bed and you cant find him. That is the worst fear you have, control it and help yourself out with a little bit less stress on your hands. I hope this helps.

Stacy

May 7, 2011 12:14 p.m.

~Norma- don't feel guilty at all! You need to realize you are not superwoman and you are doing what is best for your mom and for you! There is nothing to feel guilty about having someone come in and take care of her. Its prob. even a good change for your mom she may need a break from you and someone who will listen and talk to her when she wants to tell the stories you already heard 50 billion times. it gives them a break from you too.. so don't feel one ounce of guilt. I respect the choice you made and agree with you whole heartedly! Kudos to you!
Some people dont do that is that is the number one problem with family taking care of their family members.. abuse because they can not care properly for their family and they are in denial about what is going on. they are stubborn and cant see what is good for both the family and themselves. You did and I applaud you very much. No one will look at you like you failed! You didn't. You are doing what is best.
Thank you for being a wonderful daughter!!

Stacy

May 7, 2011 12:06 p.m.

I would like to first let everyone know I am a caregiver for 52 residents in a memory care facility. Nothing is harder then knowing there is nothing you can do but love and support your family member. Family members who have any type of dementia are on a daily roller coaster with some good seconds and some bad seconds. Remember they are just as frustrated with what is going on with them as you are. Try to keep them in their happy memory no matter how crazy that seams if they start talking about something that happened years ago it was memorable to them and it's something they can actually remember. Go with it.. talk about it and hear some fantastic stories. Don't try to tell them they are wrong even if they are. It matters to them so be there for them. Keep an open mind their memory is shrinking and plaque is building up on the nerves in their brain(metaphor). It is a slow process. One day they remember who you are the next they are scared. Tell them you are just a friend and the person they are waiting for will be back in a few hours to pick them up then redirect them try and get them doing something they love! When they were little what did they love to do? I love what I do and every person counts. Every Family is my extended family and I treat everyone the way I would like to be treated. You are not alone! There are millions of people in the world who are just as angry and frustrated just remember how would you feel if every 5 mins or every hour you had forgot something?

Stacy

May 5, 2011 10:33 p.m.

Joan:
There are AD patients who do not get combative. My sister-in-law was always very docile. I don't know what my husband will be like. He started Alz about 3 to 4 years ago. Memory is much worse and he has a tough time communicating but otherwise is very easy-going. I can still leave him alone for two or three hours and that is a blessing. Doesn't wander. Things can change from one day to another. Motto is Live For the Day. You can't prepare yourself for what may come.

Shirley

May 5, 2011 4:18 p.m.

Leeza...your experience with your Mother was identical to my wife &amp; her Mother,in 1995.
Today, Joan is afflicted...I am pretty much &quot;it&quot; as caregiver... have an aide 10 hours a week...kids nowhere close...friends have died. I had a severe burnout for two days, but the love of a 60 year marriage pulled me back together. She has also become physically challenged... in a wheelchair...We have a wonderful son who is my rock, and an online support group of friends. They give me strength and love.

Frank

May 5, 2011 2:35 p.m.

My mom was diagnosed with dementia about two years ago, though she was showing signs before that. I have four sisters and we have struggled tremendously with my mom's illness. My mom feared this disease and she has never been accepting of care. Initially my sisters and I attempted to care for her in her home, though not very successfully. About 7 months ago the decision was made to move my mom into my home, to live with my husband and I and our two daughters. My daughters, both teenagers, were better than any medication a Dr. could prescribe. I couldn't have done it without them. I believe that God gave us a gift by allowing us to have that time with my mom. It was difficult, by my mom taught us so much about coming together in times of hardship, supporting one another, and putting your own needs aside to care for someone who cannot care for themselves. Recently we placed my mom in a care facility. Without a doubt I question every day that I did all I could, but my mom's disease has progressed rapidly and I knew she needed more care then we could provide. My mission is to pay it forward and somehow help other families in need who are going through this same crises. My background is in education and counseling and I am also a fitness professional. I believe that physical and emotional health are critical to care effectively for loved ones with this disease, as well as help and support from others.

Angie

May 5, 2011 9:56 a.m.

It is extremely important for caregivers to take care of themselves and to give themselves time away, even if it is dinner and a movie or a weekend trip. I have been taking care of my father-in-law whose has been diagnosed with AD currently stage 5. Most days just flow, however I can tell when I am needing a break. I am a person with great patience and yet this disease challenges me on a regular basis. Prior to becoming a fulltime caregiver I was seldom sick. I always viewed it as a mom thing because moms have to keep going when they are sick. Now I have experienced illness' that do not allow me to keep going. I am forced to lie down and allow the illness to take it's tole. I have also experienced depression for the first time in my life and the only thing I can relate it to is the caregiving. I have made the decision to go back to work for my own wellness and will be utitlizing a caregiver that comes to our home for as long as he is able to stay in our home. I do realize that working full time may add a whole new level of stress to this situation but I do feel this is the right thing to do for myself. Now I will have to deal with the guilt that is going to come along with this decision.

Norma

May 5, 2011 8:44 a.m.

All of this scares me. We are about five years into this journey with Alzheimer;s, and my husband is even sweeter than ever
we sit in front of the T.V. and hold hands a lot of the time. Yet, I can't leave him alone because he has a tendency to wander. I really don't mind too much. I know it will get worse, I plan to join a support group soon, but sometimes I think I would be better off not knowing what is in store. I have bee told that not all A. patients become combative. Is this true?

Joan

May 5, 2011 6:56 a.m.

Dealt with Alz. for 4 yrs and tried to keep struggling along. Spouse was very argumentive and there doesn't seem to be many comments on tv documentaries or in newsletters re: the anger. It was the toughest challenge and I don't think any of us are a match for the disease. Not too many others were willing to take him even for a few hours. He has since passed and I still wish so profoundly it could have been easier for him and me. It was a difficult maze to navigate but I gave it my best shot which wasn't enough. I read &quot;somewhere&quot; that if one feels guilt, it was because we cared but couldn't fix it. One thing I feel is paramount: if a loved one needs to be placed, they should be with those who are in the same stages. This seems to be non-existent. Try hard to keep your own health. Caregivers take a heavy hit and eventually get ill themselves.

Catherine

May 5, 2011 6:23 a.m.

What a fantastic article.

Cheryl

May 4, 2011 8:08 p.m.

I cared for my husband at home for the 15 yrs he had AD, with the help of my son who gave up his life to assist 24 hrs a day, 7 days a wk, also 6 yrs in an adult daycare center while I kept working, and finally 14 months in home hospice with some occasional hourly help from a caregiving agency. We just kept &quot;readjusting to the readjustments&quot; and patched things together accordingly. My husband died two months ago, peacefully, without pain, without agitation, without medication, without infections, without skin breakdown, in his own bedroom, surrounded by his children. Our prayer was for our own strength and courage and for my husband to have a peaceful death. God answered our prayer. In looking back, I would advise those caregivers just beginning their journey to educate themselves. If you are reading this blog, you can google the Reisberg scale to find out what you will be dealing with and a rough timeline. Knowledge is power. Keep a journal of all the funny things that happen along the way---my son and I still chuckle over some of the amusing things that were said and done. Each person has his own unique story. That's life.

Charlene

May 4, 2011 6:49 p.m.

Understanding that I have limits and not feeling guilty, is not easy. I realize it's time for me to reach out but it's so hard. The quote from Laura Bush, is important. This was a wonderful article.

Kathy

May 4, 2011 5:22 p.m.

I need help. I cannot hanle my spouse alzheimers.

nick

May 4, 2011 5:08 p.m.

Is there anyone on line you can talk you as a caregiver??

jOHN

May 4, 2011 3:19 p.m.

My mom was in an assisted living apt. for 3 years, and has been in a group home for persons with Alzheimer's Disease for over 2 years. I visit once or twice a week, but the visits are not very meaningful for either of us anymore. Mom knows me but interacts very little; this causes me to feel that visiting Mom is a lot like not visiting Mom. Today after seeing her and having a meeting with the social service agency which pays for some of her room, board and rent, I am so profoundly sad, depressed really. I have gone through what other posters have mentioned -- arguing with Mom, out-of-state relatives offering entirely useless suggestions, choosing places for her to live, making all financial arrangements, selling things off, etc. One of the things that makes me so sad is just the idea that we often outlive our brains and abilities. It's got to be an awful way to live, and it scares the hell out of me to think this will probably happen to me, too.

JoAnn

May 4, 2011 3:01 p.m.

I understand Leeza's point, but I think she is wrong about &quot;knowing that your effort will be enough.&quot; There are many times when my efforts with my Mom are not enough. They are the best I can do, but sometimes they fall short of what I need, or what Mom needs.
I feel that the caregiver must remain optimistic, but not delusional. The cold fact is that my Mom will not get better. She will have some days that are better than others, but the Mom I knew for 80 years is just not there anymore. If I cannot deal with this, I need to have someone else care for her.
I have had to understand that I can no longer reason with my Mom on things. I presented a well thought out summary of why, at age 84 with macular degeneration, she needs to cease driving. At the end of my words, she said basically that she owns her car, she has a driver's license, and she ought to be able to drive. She asked me whether I believed there are other people out there driving who should not be? I said of course, but that she needs to not drive. It then digressed into an argument.
I think each caregiver can learn from all the information available, but that each situation is unique. Each caregiver must have realistic expectations; without that, a caregiver will be perpetually disappointed. Anyway, that is my 2 cents worth from Snellville, GA.

Mark

May 4, 2011 2:45 p.m.

The first two things are easy, but the receiving is hard. My family helps by giving me ultimatums, pressuring me, suggesting things I have already tried. Their help usually exaserbates my anxiety and does little in the way of helping me or my wife. Their answer to everything is a nursing home, liquidating my assets, and moving. I'm faced with my wife's mild violence and confusion late at night and early in the morning, but the rest of the day is she is confused, but peaceful. I don't feel I can share anything, because the minute I do I get blown over by unbridled pressure to do what they want, not what's best for us. I'd rather suffer in silence.

Frank

May 4, 2011 2:41 p.m.

I watched the Larry King Special but did'nt learn anything I really didn't know. Nothing mentioned about Caregivers from Agencies outside the home and the final decision of a Nursing Home and how hard that is when the time comes.

Nancy

May 4, 2011 1:00 p.m.

Yes, Mary, there are support groups for us. The Alzheimer's Association, I think there is a chapter in every state, offers support groups. I belong to one. It's very helpful knowing that I am not alone in my struggles. 800-272-3900 is the Alzheimer's Assn. 24/7 helpline.

Carolyn

May 4, 2011 12:31 p.m.

My husband has Parkinson's dementia and is in a nursing home, due to my inability to physically or emotionally care for him. But I try to spend as much time as I can with him, partly for his benefit and to be some small help to the nursing home staff. As you all know, his personality has changed drastically. Very demanding, needy, sad, defiant, paranoid, etc.
Since I'm now in complete charge of all home responsibilities as well as the things that he used to take care of, I'm struggling with finding the time to do everything effectively.
One of the things I'm trying to do is to rid myself of most of my material entrapments. I know that I no longer have time for most of the things that I used to do; sewing, crafts, gardening, reading, etc. So to simplify my life and my space, I'm just disposing of a lot of those things. And you know what? It feels good! Life gets too full and complicated anyway.

Elnora

May 4, 2011 12:29 p.m.

I can really relate to Mary's comment. My father is very defiant and does not believe he has Alzheimer's. I too have been advised to take better care of myself (I laughed out loud when reading about gastrointestinal/sleep problems). How can you support, love and nourish a family member with this disease without it becoming your world?

Kathy

May 4, 2011 12:09 p.m.

I have become so frustrated and exhausted from dealing with a defiant mother with early stages of Alzheimer's. When I read this, I first took those 10 deep breaths. I immediately felt calmer. I need to work on being more of an Optimist and realize and accept I must take care of myself in order to re-energize. I wonder if there are any Alzheimer's caregiver's support groups?

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